Sunday, September 4, 2016

One Great Day


There are two great days in a person’s life-the day we are born, and the day we discover why. -William Barclay

I must admit, that I have had more than two great days in my life. Just to name a few, the day I was born, the day I was baptized, the day Nathan asked me to marry him, the day I entered the temple for the first time, the day we were sealed in the temple, the days my babies were born, the day I received my bone marrow transplant, the day I was declared “cancer-free,” and, today, the two year anniversary of my bone marrow transplant. This day is extra special because, statistically, the two year mark following a bone marrow transplant, indicates that if the cancer has not returned, then it shouldn’t. It is a day that we have looked forward to since we spoke with our Bone Marrow Transplant team nearly three years ago. I remember the cute little jar with the pebbles that my sister, Ashley, gave to me to count the first 100 days after my transplant. I have long since stopped dropping a pebble in that jar everyday, and it is amazing to me that if I had continued, there would be 730 little pebbles in that jar.

I went to my Dr.’s appointment two weeks ago, and my labs never looked so good. The time when blood transfusions, biopsies, chemo, radiation, and hospital stays, were everyday life, are over, and for that, I am truly grateful! My health isn’t perfect. I am still weak from the treatments, and have developed Chronic Graft Vs Host Disease (GVHD) which has affected my digestive system, and most recently has caused Scleroderma which is a hardening of the skin, tendons, and joints. Mostly it has affected the joints in my ankles and feet, which has made walking a little tricky at times, (I even tripped over my own feet and broke my arm, but that is a story for another time.) and causes a lot of pain, but we are trying to work through that and we have hope that with new therapies, and with continued faith and prayers, I can heal, or at the least, manage it for a quality life.

Over that past week, as this day has been approaching, I decided to pull up the blog and read what Nathan had posted while I was sick. It was so interesting to read his perspective through that time. It has actually inspired me to post myself, for once, but I have been hesitant, because I don’t feel that I could do the blog justice. He has done such a wonderful job at not just keeping friends and family updated, but in such a thought provoking way. Enough to say that maybe, honey, you should quit your day job. *wink *wink But in all seriousness, I have been thinking lately of the “Why” of my life, for instance: “Why I was spared?” “ What am I supposed to do now?” Partly, I have figured out that the experiences that we have had are, in a way a gift. And gifts are meant to be shared.

I think in the beginning, I didn’t really believe that we would actually make it here. It wasn’t that I didn’t believe that it was possible that I could be healed, it was more of a question as to if it were in my plan to be healed. Our faith and feeling that somehow, I would make it, was always tempered by the reality of the Medical world, which was that my odds were not good at beating such a rare cancer. Also, there were those days when I just felt rotten, and in some ways, hoped I would just be taken to be put out of my own misery. Those were the times that left me with doubt that I would ever be able to stay on this earth. However, the tender mercies and the miracles we have seen along the way would suggest that my plan is to continue on this earth a little longer. I am so grateful for that. It was the desire of my heart to stay with my sweet Nathan and babies. I know that the outcome for everyone in these matters are not the same, despite righteous desires, faith, and prayers. I honestly feel that my life has been spared not because of my own doing, but because of the faith, and prayers of so many around me. Because of the belief that miracles can and do occur, they can happen. I have been a witness and the recipient of the promised blessings that come from the power of faith, and in that, I feel I have been given a most valuable gift, to share. I hope in some way, our experiences have helped give others hope for their own lives. A part of the why I was born, I believe, is to show that Heavenly Father does listen to his children and that he loves us. Despite my own unbelief at times, I know that if my righteous desire to stay with my family here on earth was not granted, then there was something so much better in store for all of us.

So on this, my two-year “birthday,” I would like to offer anyone who may be struggling with loneliness, doubt, depression, despair, heartache, sadness, fear, sorrow, or pain - the gift of hope. Faith does produce miracles. God is aware of us. Love can conquer all. Christ’s atonement is real. That is my witness and the“Why” to my life. And a big shout out to everyone that has ever offered a prayer in our behalf, served us in any way, and lifted our burdens, I say “Thank You” and “I love you!” You know who you are. ;)

Sincerely yours,

Tiffany

Saturday, November 22, 2014

The Power to Up Lift

Personality has the power to up lift, power to depress, power to curse, and power to bless.
~Paul Harris

Tiffany has a way to brighten peoples lives.  I've seen it many times.  Whether it is with her smile, her service, or her great outlook - she creates happiness with so many people.  Here in the hospital it is still the same.  Her smile and personality continues to put smiles on the doctors and nurses faces, and in turn, it seems like they work harder for her, as they seem to care just a little bit more. Just today one of the nurses suggested that they are excited when it is there turn to take care of Tiffany, in large measure because of her attitude and goodness.  Indeed the feeling she says is mutual.  She loves the staff here at Huntsman.

Her battle with GVHD continues.  And though she is responding to the treatments, the response has slowed down substantially.  The doctors said best case is that she responds and will be out of the hospital in the next 9-10 days.  But they threw caution at us as well, suggesting that was best case, and it was possible to be another 6-8 weeks before she can come home. 

My personality at that news was to first to curse, and then be depressed.  We have been through a lot this year and even though we have had so many wonderful blessings in the form of family, friends, and many miracles, I was looking forward to spending the holidays together as a family.  Starting Thanksgiving we had every Thursday through New Years lined up with something to celebrate.  Our 15th anniversary is a week after Thanksgiving, Day 100 post transplant was on Dec 11th, Emma's 12th birthday is a week later (holy cajole, she is almost 12!!) with Christmas the following week.

So, as the doctors continue to tell us it could take a while, I get the feeling I am going to have to boost her out of this joint!  Any body want to help?

But, you see, Tiffany wasn't cursing.  She continues to tell me it will be alright and lifts my spirits.  She does miss being with the children but is so grateful to the friends and family that take care of them and keep them smiling.  Knowing they are well taken care of takes of any depressed feeling she might have.  She continues to wage war on this cancer and plans to be victorious. 

As a friend noted the other night, we will take this one holiday, event, celebration at a time. 

And then, eventually, we will be home and enjoy time with family.

Cheers,

Nathan

Wednesday, November 19, 2014

Quick Update on Tiffany

Just a quick update on our Tiffany. 

Biopsy results from the colonoscopy came back from docs yesterday.  It did confirm that it is GVHD in her gut and skin and was in a high stage and so recovery time is going to be longer than we expected.  The docs told her to expect to be in the hospital for the next week and a half. 

She is responding to the treatments, however, and aside from not being able to eat (getting fed from intravenous nutrition) until her bowels heal, she is doing rather well.  Her spirits are up, she can get up and walk around, and most of the pain/discomfort she has is not due to this GVHD, but rather just the pain of recovery from the transplant as well as the nerve sheath tumor she has had in her spine for a few years now (benign, in case you didn't read that far back about that issue, but it presses against the nerves and gives her substantial pain in her back and down her legs... something we will likely need to take care of once she recovers fully from the transplant.)

A big thanks to the many people that have helped with meals, taking kids and dogs and so many other things.  We appreciate you more than you can ever know.

Cheers,

Nathan

Sunday, November 16, 2014

Good riddance, be done with you, and never come back again!

I had a post ready to go like a month ago, but I never finished it.

But today, I sit in the hospital room watching Tiffany sleep peacefully, listening to some uplifting MoTab music, and figure I should probably take a moment to write.  Wish I could say I have a good excuse for not posting anything new over the last 45 days or so.  Well, actually, maybe I do have a good reason.

But today I post, to give update to all the masses who wish to know what is going on with Tiffany.  There have been many which have heard a rumor here or there about her and are wondering what is really going on.

Let me start with the kids.  They have been doing marvelously well, with much thanks and gratitude for the many neighborhood friends who take care of the littler ones after school, driving to and from school, and many other little helps that add up to a lot.  However, they are tired of having to take a shower and change clothes every time they come home.  But they do it because they know they are protecting mom.  And then, I need to give thanks to those that have been helping us with laundry.  With the kids changing clothes, sometimes two or three times a day, laundry stacks up quite quickly.  We love and appreciate all those that help.  We wouldn't be doing quite so well without all that help, and we want to express our thanks.   And though I don't call out names (as stated earlier, there are too many people who help and if I started naming names, I would surely, inadvertently, miss somebody and I would feel awful) I do want to thank Tiffany's mom.  She has been with us every week since Tiffany came home.  She has tirelessly served our little family as she puts her life on hold.  There is no amount of words that can convey the feeling of gratitude we have for her, and for the hundreds of others that continue to help and serve me, Tiffany and the children.  Thank you, from the uttermost bottom of my heart.

And now on to Tiffany.

So, up till day 68, we have had a good ride.  No real complications in the post-transplant process.  Every week Tiffany would go see Dr. Boyer and his team and they would always come back suggesting she was far ahead of schedule, that numbers looked ecstatic.  Her platelets and blood counts have been much higher than they have been for the last three years.  She would often be found sleeping late into the morning, and having a few naps here and there throughout the day, a response the body has in trying to recover from the transplant as it produces the new cells and immune system she desperately needs.  As time continued, the docs drew down the medications that were helping her stay propped up, pushing more and more of her own body to create the energy she needed to recover.  She has been weak, and just able to move up and down stairs enough to participate in family gatherings and to be around and interact with the kids. 

As stated previously, she has been taking anti-rejection drugs that allow the donors blood and her own tissues to co-habitate without fighting against each other, a condition which if did happen is called Graft-vs-host-disease (GVHD).  However, as much as we don't want this to happen, we do want it to happen just enough... a process called Graft-vs-Disease effect... a fine line between allowing just enough rejection where the donors cells are allowed to go and kill any remaining cancer cells, but not enough to do damage to other critical organs.

Over the course of time the docs were decreasing the anti-rejection drugs in an effort to instigate this graft-vs-disease effect and we started seeing a skin rash occur in early October.  That was minimized with some steroidal cream and onward we continued until day 63 when the doctor had reduced the anti-rejection drugs to nothing.  That was Thursday, November 6th.  Things were going all right until Tuesday, November 11th when Tiffany started vomiting and having some bowel issues.  A trip with her mom up to Hunstman in the morning caused a bit of a stir as her blood test came back showing a rapid decline in her platelet count, down to 100 from the prior week to a low of 23 we haven't seen since the transplant.  They took some additional tests and told her to watch for bleeding and to plan on coming back on Wednesday to see what else might be happening once the tests came back.  She came home and about 4 in the afternoon, had some heavy bleeding.  She and I went back up to Huntsman that evening and they gave her a platelet transfusion to help stop the bleeding.  She continued to have abdominal pains that night and into Wednesday.  She and her mom went back up to Huntsman and her platelets, even after the transfusion, had dropped some more, and she had another platelet transfusion.  The tests had come back negative for some bacteria and other viruses they were testing for and told her to plan on coming on on Thursday, her normally scheduled weekly visit time, and plan on getting a bone marrow biopsy.  The docs suggested that they were trying to find out why the platelets had dropped so quickly, and the dreaded bone marrow biopsy would help them fill in some blanks.

Well, she came home and ended up in bed.  We called in our Home Teacher to help give her a blessing and shortly after, she spiked a fever of a 102.  A fever of 102 for a post-transplant patient prior to 100 days (and likely after for a while as well) can be dangerous, so we called the doctors and they had us come to the University of Utah emergency room.  We did.  And about 4 in the morning were finally admitted into the Huntsman hospital.

For the next couple of days, they did some tests, and finally concluded they needed to do a colonoscopy to find out if there was inflamation of the GI tract and take a biopsy to confirm if she had GVHD in her gut.

That was Friday evening.  Saturday morning came and the doctors said the biopsy won't be able to tell us the severity of the GVHD, but they are very sure it is GVHD of the gut and started her on a regimen of medications to start fighting back against it.  At the same time she was admitted, she also started getting a rash on her back.  They were going to do a biopsy of it as well, to see if it was GVHD of the skin, but opted not to, as it has spread to most of her back, legs, and itches like the dickens (I really don't know what the dickens itches like, but it must be something crazy).  They are positive it is GVHD of the skin and the drugs they are using to help the gut should help with the skin, so they have decided not to biopsy it.  It is likely this GVHD that is also causing the decrease in the platelets. 

And so we wait, patiently, as we seem to do a lot of over the last few years, as we wait for the fix to happen.  The docs have suggested, depending on the severity, she could be up here at the hospital at least a week, and likely longer.

So I sit here, watching her sleep.  Grateful she can do that.  She really isn't in a lot of pain, well, not the acute painful pain she was feeling prior to coming to the hospital.  Due to the GI issues, she is on a clear liquid diet and getting nutrition via intravenous nutrition (called TPN).  She has the continued normal aches and pains she has been surviving with, and from time to time abdominal pain increases and the itches come and go but we continue onward.  Knowing, or at least hoping with faith, this is a little blip in the road to recovery...

And the silver lining to all this... that this process of pain she is undergoing, is at least doing as much, and hopefully more damage, to any remaining cancer cells that may be lingering.  And we say to such cells,

"Good riddance.  Be done with you.  And never come back again!"

Cheers,

Nathan

Wednesday, October 1, 2014

Open Letter to Mike and Anna Wangemann (and the rest of the neighborhood)



September 30, 2014
Mike and Anna,

You silly fools!

You asked me if there was anything you could help me with and I said no.  You continued to ask, as good friends do to help.  You have helped us out (and continue to help) with family home evening lessons and activities.  But yet you continued to ask.  As time to transplant came closer, all the various trips to and from the hospital, all the dealings with IV's and drugs and everything with Tiffany, with school starting, and heavy work issues, I admitted that it would be a huge stress reliever for some help to get the house ready and finally relented, asking if you would come in and help me replace some floors while Tiff was in the hospital.  Tiffany needed to come home to a clean house, and with carpets as old and worn as they were, we needed to replace them and get the vents cleaned, with the idea that we would clean the rest of the house and that would be good enough.
Well, it wasn’t good enough, apparently.  You had other plans while we were at the hospital!

I have tried to list everything that you (and the literal legions of people that worked along side you) did for us, and the list continues to get longer each new day as I notice something else that has changed, better organized, cleaned, fixed, etc, etc, etc.

Though I know you know what you did… let me list what I KNOW has been done, so you can see what you accomplished in just over two weeks’ time.

  • Painting of bathroom cabinetry
  • Replacement of master bathroom countertop
  • Awesome brand new master bathroom sink
  • Brand new faucets (in both bathrooms)
  • Brand new shut off valves (like, everywhere).
  • New toilets in the bathroom (master bath has a extended height toilet and kids bathroom has a lighted lid for help at night)
  • New king size bed and headboard (understand people from Logan made this happen)
  • New sheets, pillows, blankets for new bed. (and this too)
  • New dresser to match headboard (and this as well)
  • New fan light in master bedroom
  • Organization of closet/dresser
  • Removal of stair banisters and replacement custom built banisters (And I mean awesome custom)
  • Wall addition in family room to create an office room - allowing kids to watch TV or do homework in the area while I work.
  • Repairing foundation wall crack
  • Duct work into office.
  • Re-wiring of light fixtures into office and in family room
  • Custom shelving in office
  • Flooring in office
  • Mold and dust cleaning
  • Fresh paint in Bathrooms, Office, Master Bedroom and other areas
  • Adding an additional cabinet (thanks to mom and dad)
  • Painting of kitchen cabinetry
  • Adding hardware on the kitchen cabinetry
  • Adding can lights in the kitchen
  • Replacement of the range oven - with a nice flat top cook area finished in black and stainless steel 
  • Replacing our little microwave with a microwave range top
  • New stainless steel sink, with amazing faucet hardware.
  • Removal of our old swamp cooler vent and controls
  • Removal of creeks in the upstairs hallway
  • Adding a HEPA filter on to HVAC system
  • HVAC system (including duct work) cleaning
  • New entertainment center and coffee table in TV room
  • Re-finishing of my Great-Grandmothers dresser (now being used by Emma)
  • Refinishing of our desk/hutch, re-purposed for an awesome setup in the TV room.
  • New lamps in the master bedroom and TV room
  • New side tables for the master bedroom and TV room
  • Various new wall decoration/ornaments throughout the house
  • Changing of all brass light fixtures, door knobs, and hinges to a polished nickel, including new chandeliers in the front entryway and over the kitchen table.
  • Additional shelving in our storage room (thanks mom and dad)
  • New light switch in our storage room (thanks mom and dad)
  • Cleaning out my garage
  • Taking old items to DI/garbage
  • A deep/steam cleaning of the whole house just prior to Tiffany’s return

And on and on and on (just found out that the Afgan was crocheted by the wonderful hands of Sister Darrington - wow).  My fear is I have just left something off.  I know I have.

And then there are the stories from EVERYBODY who I come in contact with.  I can’t go out in the neighborhood/church without somebody telling me of coming and helping.  I know that you didn’t do it all.  I know that there were people with experience and expertise that helped.  It constantly amazes me the sheer number of people who helped with the project.  My parents, who had the wonderful opportunity (ha, not sure they would call it that ;) ) to live through the craze, suggested it was just a constant buzz of new people coming and going and doing so many things.  Everyone that shares the stories with me share it with a smile on their face.  They share of the joy they had doing it and the fun being able to talk and work next to others in the neighborhood. 

And when all is said and done, not only was the place amazing, but it was clean.  Cleaner than any other option we considered.  In fact, as Tiffany and I discussed what to do after the hospital stay, we wondered if it might be better to stay somewhere in Huntsman related housing, partly due to cleanliness, but mostly due to distance.  But there was no other place that would have been more prepared for Tiffany to stay.

You asked me what my favorite room was.  And to this day, I am in awe of each room you guys fixed up.  Seriously, when I enter our bedroom, even a week later, I just go in and think – wow, this is nice!  It's bright, beautiful and the feel is just amazing.  Then I go to the master bath and think the same thing.  When I sat in the kitchen cooking dinner today, I thought, wow – this place shouldn’t belong to me – this is too nice.  I then walk downstairs into my new office and think to myself – “I have an office!”.  Of course, to get to it, I have to walk in the downstairs family room and there is now a sense of awe as I look at what you did with that space.  

No, there are no favorites.  All we all feel is a sense of humility everywhere we go.  I don’t know how to get that across to anybody the depth of gratitude we have for what you have accomplished.  Our home will never again be “our home” but rather, the “neighborhood-home,-built-with-love,-and-we-get-to-stay-in-it” home.  We are indeed indebted to you, and though you will always say we don’t owe you, which I understand, please understand our side of this, that we look forward to finding a way to properly thank you and the neighborhood. As you come in contact those that helped, would you give them a heart felt thank you for us?  We would be most grateful.

We came home that Saturday and Tiffany’s eyes were welled up with tears as we ‘toured’ our new home.  She feels just as deeply of gratitude and humility that I feel.  We will ever be grateful for it.

Thank you.

From the bottom of our hearts, we thank you.

The day after we came home, was the day the Ogden temple was re-dedicated.  That temple had received a makeover of enormous proportions.  It is now more beautiful than ever.  We felt the same way about our home.  So we opted to hold a very special family home evening the next night and in similar fashion, re-dedicated our home.  As such, it will always be a place for people to come and feel the spirit.  We think anything less will be a stain on what you have done.

Thank you, to you and everyone, for all you do in making our little neighborhood a little piece of heaven.  No, strike that.  A large piece of heaven. 

With much love and appreciation,

Nathan and Tiffany

PS - to you and everybody else, thank you for filling up our freezer with meals.  It is full to the brim - this really assists me many nights when I am working till late and can get a meal on at a decent time.
Oh - also - a big thanks goes out to the people who have continued to weed and mow our place.  I know you had an 11 year old scout group come and mow one night.  Dallin deeply appreciated that!

Before - Front Room
After - Front Room

After - Front Room
Before - Front Room
After - Front Room


After - Front Entry

Before - Dining area
After - Dining Area
Before - Kitchen
After - Kitchen
After - Kitchen
Before - Basement Family Room


After - Basement Family Room




Before - Basement with office Alcove
After - Basement TV room with built out office

New Office!
Before - Bathroom
After - Master Bathroom
Before - Master Bedroom
After - Master Bedroom (with model)
After - Master Bedroom (with model)
After - Going down to TV room from Kitchen


After - Detail work of the banisters


Wednesday, September 17, 2014

Engraftment Day

The sores came, the hair has been lost.  Days 6-10 were awful.  On more than one occasion, Tiffany suggested that there is no way she would do this again.  To which we both noted, we won't have to.  This will work.  It has to.  And it feels like it will.  Just a peace.  And really, a similar peace we have had for a long time, so I can 't really say it is different, just that either we will get what we want or something better.

Starting on day 3 after the transplant she started to feel pretty blah.  She has a hard time describing it, but it was just a feeling of blah.  And then shortly after that the mouth sores came.  For as long as she could, she tried to eat, but eventually she went to an intravenous food having a hard time eating or swallowing.
Sunday's Turkey Dinner, with cranberry sauce, mixed vegetables, mashed potatoes and turkey gravy.  On Monday it was a hamburger and fries.  Tuesday morning, this was her biscuits and gravy!
Tiffany's IV pole.  And this was a good day! ;)


Somewhere around day 8-9 was the worst.  She felt awful, and those were the emotional hard days when she suggested she couldn't handle this ever again.  But throughout the process, she pushed herself hard to get up out of bed, got on the stationary bike, and went for walks through the BMT floor.  Nurses were always surprised that she was up during some of those days and so was I.  There were times where she just sat down, but even then she sat up much of the time rather than laid down.

On day 11 we saw the first uptick in her ANC (Absolute Nutrifil Count - infection fighting white cells).  It came in at about 120.  And she started to feel better.  Day 12 and counts went up to 370 and she was feeling so much better.  Day 13 and today her counts came in at 707 - well above the 500 needed to be considered engrafted.  So today is now considered Engraftment Day!  She needs to stay above the 500 ANC over the next couple of days to be considered fully engrafted (and based on how she is doing, doctors and nurses don't expect any trouble).  She is eating better and although appetite isn't the best nor can she taste everything the same, she is starting to eat and she is slowly getting off all the IV drugs she was receiving.  She has not had any complications and Dr. Boyer suggested yesterday that she could be ready to go home by Friday - Day 15!  That is amazing!  We were told to be ready to be in the hospital for 4-5 weeks.  Day 15 will be 1 day past 3 weeks.  So we are coming home a full week earlier than we were expecting. 

But therein proves to be a small problem. 

I won't go into detail now, but our home won't be ready for her to come home (Tiffany reads this, and there is a big surprise waiting for her - so details can't come yet - but rest assured - it will).  Suffice it to say that there has been a neighborhood project going on, and they are hoping to be finished by Saturday, allowing her to come home to a clean home.

We shall see what happens, but we are so excited that she has come back so fast!

A big thanks to family.  Tiffany's family have been helping me keep her company, helping her in the hospital (and trust me, it's not a vacation - thank you).  Also a big thanks to my parents who have come out to stay with our children.  Not an easy thing to do for 3 weeks, especially with school having just started, kids crazy schedules, and a TON of things going on at the house, they have truly been troopers through the process.

Also, thanks for all the prayers - they are indeed the reason for such a quick recovery.

Cheers,

Nathan




Saturday, September 6, 2014

T + 2

T +2 - Saturday September 6th

Special delivery happened on Saturday.

Tiffany's platelet count dropped to a 5.  Nothing unexpected and not really new, perhaps as low as she has ever been, but without any bone marrow creating them, we will expect for them to drop again and again until engraftment of the donated stem cells.  We were informed early this morning that we would be getting them soon. 

As of 2  in the afternoon we hadn't received them yet. 

Apparently there was an issue with a machine that takes the platelets through some tests.  So, for whatever reason, Tiffany is getting a special delivery of platelets from.... Colorado!  They are flying them in special just for her.  Most other patients with higher levels of platelets (but low enough to need a transfusion) are going to have to wait for the issues with the machine to work again.  But Tiffany's platelets are so low that she needs them ASAP. 

Just another day in the journey through this life.


Cheers,

Nathan